Supporting families affected by Robinow Syndrome through community, resources, and research
Families Supported
Years of Service
Research Studies
Robinow Syndrome is a rare genetic disorder characterized by distinctive facial features, short stature, and skeletal abnormalities. Often called "fetal face syndrome," it affects approximately 1 in 500,000 births worldwide.
Our foundation serves as a beacon of hope and support for families navigating this journey, providing essential resources, fostering community connections, and funding crucial research to improve outcomes and quality of life.
Explore ResourcesWe understand that every family's journey with Robinow Syndrome is unique. Our comprehensive support system is designed to meet you wherever you are in your journey.
Connect with our support team and other families who understand your experience. We respond to all inquiries within 24 hours.
support@robinow.orgJoin our secure online community where families share experiences, advice, and celebrate milestones together.
Join Network →Monthly webinars covering medical care, educational advocacy, and practical daily living strategies.
View Schedule →Our signature events bring families together for learning, connection, and celebration. These weekend gatherings are the heart of our community.
Join us in Panama City Beach for five days of workshops and family activities.
Connect directly with leading specialists and researchers in genetics, orthopedics, and developmental pediatrics.
Age-appropriate activities for siblings and family members, creating lasting memories and friendships.
Access our extensive collection of medical guides, educational materials, and practical resources curated by medical experts and experienced families.
Comprehensive medical information and care guidelines reviewed by specialists.
Browse GuidesTools and advocacy resources for navigating special education services.
Get ResourcesOur comprehensive 80-page guide covers everything from initial diagnosis to adult care, including growth charts, surgical considerations, and quality of life recommendations. Developed in collaboration with leading medical specialists.
We fund groundbreaking research to better understand Robinow Syndrome and develop new treatments that improve quality of life for affected individuals and families.
Comprehensive analysis of genetic variants to improve diagnostic accuracy and understand phenotypic diversity across different populations.
Multi-center clinical trial investigating the efficacy and safety of growth hormone therapy in children with Robinow Syndrome.
Longitudinal study examining physical, emotional, and social outcomes to inform comprehensive care strategies.
Whether you're newly diagnosed, need support, or want to get involved, we're here to help connect you with the resources you need.
123 Medical Center Drive
Suite 456
Research Triangle, NC 27709